I am currently working on another blog post, but since that is taking me longer than ususal I thought I would drop my followers a message and let them know I have not stopped blogging and am still around. I have been quite busy what with Christmas, my volunteer jobs and working on my various projects which has ment I have become behind with my blog posts, for which I apologise.
Meanwhile my blog now has its own Facebook page. I post things I come across that seem relevent to the things I blog about most. I post links I come across during blog research that I think my followers may find intresting, Facebook posts and memes that put across points I believe better than or at least as good as I could say them. If you have Facebook do give my page a follow under Artificallyhip (all one word). If you do not have Facebook don’t worry I will be publishing another post here soon.
When I first heard about lockdown happening in other countries on the news I obviously hopped it would never come to that here. The idea made me slightly anxious and I tried not to think about it much. However when lockdown was announced here I was not surprised and knew there was nothing I could do about it. Like everyone else I had to learn to cope with the situation and deal with it as it unfolded. To my relief I was not told I needed to shield by my doctor. I think it would possibly have been too much for me living in a flat with no garden on my own. I feel for those who have been shielding with no outside space at all.
I pretty quickly established a new routine for myself. Being autistic routine helps me, especially in difficult situations. I decided to go out every other day for exercise and shopping. Since I do not drive and public transport was advised against, I could only shop within walking distance of my flat, so no large supermarkets. Luckily most places in my small town are within walking distance, even for me with my chronic pain issues, except on my absolutely worst days. I found it too physically and mentally draining walking everywhere, remembering to socially distance from others and trying to touch as little as possible to go out daily. Every other day gave me enough exercise and mental stimulation to cope. I soon discovered my favourite bakery was still open, so sometimes went to them for lunch and then I could sit in the park or by the sea to eat and watch the world around me. Mostly in lockdown here that was birdlife.
I live in a town well known for its waterfowl, both on the river and in an enclosure with some non-native species. I have always enjoyed nature, especially waterfowl, but during this time I really got into watching the birds in town. I have started to learn some more of the specious we have and have observed the differing behaviours of the birds. I find watching them quite therapeutic, it can be relaxing and help me to feel a little more cheerful. I even joined Chris Packham’s Self Isolating Bird Group on Facebook to learn more about birds and other wildlife.
Spring is a good time to keep going out and visit the same places regularly with the trees and flowers blossoming and the birds at their most active. I have watched a pair of swans raise cygnets and a goose family with goslings. I saw how they young gradually develop and change over time. Lockdown would have been a lot harder in winter, being able to go out less often and nature being less active. On a good day pain wise I would make my walk to or from town a little longer, exploring my local area. I am lucky to live near parks, countryside and the coast. I can think of a lot worse places to be stuck in lockdown.
Although I was on my own and did miss company. I missed visiting my parents which I usually do quite frequently and got a bit frustrated with being on my own. However where I live has a great community of people who have always been supportive and helpful and during this time really stepped-up for those who needed it. Several local charities got together at the start of lockdown and formed a support network to organise things. People knew I was on my own and a friend referred my name to them. It started off with a delivery a couple of days before Easter of a chocolate egg and colouring book. It helped me to feel less alone during a bank holiday weekend I would normally spend with my parents. Then a few days later I got fish and chips from a local restaurant who donated a lot of meals through the scheme. After that I started to get a meal delivered every week from the local community centre. They cooked freshly prepared meals; usually a roast dinner and some sort of crumble for dessert and all I had to do was reheat it. At first I felt slightly guilty that I was not stuck at home shielding and could get out for supplies. However it gave me something to look forward to every week and being on my own I was not going to cook a roast dinner for one, so it was lovely to have one delivered, as I could not go out and eat anywhere else. Plus I felt I was sort of earning my meals a bit by keeping up with some of my volunteer work.
My weekly volunteer afternoon at the local community craft shop stopped for obvious reasons, but my online volunteering carried on. I help a local charity to run their Facebook page. They are one of the charities that made up the support network for lockdown, so I was promoting their role in that and made sure relevant information was put on our page. I put a call out for volunteers and made sure it was clear how to get support if needed. I also shared some of the information to other relevant Facebook pages and groups. It helped me to know I was doing my bit, although very small, it felt better than doing nothing.
I already used Facebook to stay in touch with people and during lockdown I used it even more as a way to feel less isolated. It is good being able to see how friends are and share things with them. In more normal times I often attend Karaoke at a local pub. A couple of the regulars formed an isolation karaoke group. We would film ourselves singing along to songs and upload the videos to the group. Although not quite the same as a night out in my local, it was quite fun filming myself, trying to make more of a performance out of it and watching others have a go. I also got a few of my friends to join in who live in other towns which was a way to enjoy something together whilst we could not meet up in person. Music often helps me when I feel lonely or am struggling mentally and during this time it was especially helpful.
I started to take photos on my trips to town to document things. I shared a lot of my photos on Facebook and Instergram. I enjoy sharing the things that give me pleasure with others. I think my photography skills have slightly improved now, although I am just using my phone.
Keeping in touch with family has helped a great deal. I do this using WhatsApp, Email and Facebook. My mum and I made an arrangement to talk every day for at least few minuets on the phone. It helped having someone to talk with when alone most of the time. It was also reassuring to know my parents were OK.
Once we were allowed to travel further and take unlimited exercise my mum came over for a few socially distanced walks. As I do not drive, I was still unable to get out of my small town, but my mum could drive to me. Although we could not hug which was somewhat strange, it was very nice to have some company. Since then single person households have been allowed to merge with another household and I have been able to visit my parents again and even stay over which has been lovely.
I am pleased with how I have copped with lockdown. I did have a minor wobbly when my kitchen hot water tap broke within days of lockdown starting and I spent a few hours rather upset, but I calmed down and dealt with the issue fairly quickly. I now have a couple of facemasks and carry hand gel in my bag whenever I go out, so feel like I am prepared for the next phase of this. It was not always easy spending so much time alone, especially as I tend to over think things and my OCD can get worse, but making sure I got out regularly helped. There were times I felt fed up, frustrated and lonely, but I am sure that was the case for many people and I still managed better than I thought I would.
I would like to thank those who have helped me during lockdown and made it a lot easier than it might have been otherwise. Friends, family, the local community and volunteers who made sure I was alright. I know that whatever happens next with this I have a great support network around me to help me deal with this.
At the start of this year I got diagnosed with Raynaud’s. Most people seem to know it gives you cold fingers and toes, which it does, but having almost constantly cold fingers and toes gives you other side effects. For me sometimes it is only a mild tingling and slightly unpleasant sensation, but sometimes it is far worse than that with flare ups that are extremely painful. One or two fingers or toes will get so cold they go white and it can last anywhere from a few minuets to on one occasion over an hour. Raynaud’s affects circulation mainly in fingers and toes, although in some more extreme cases people can be affected on their ears, nose and lips. One in six people are said to have Raynaud’s, with it being more common in young women, although any one can be affected by it including children. It is more common than I realised, which is why I think it is important more people know about it.
My fingers and toes feel cold an awful lot of the time now, even on days that are not particularly cold and the rest of my body feels fine. Even standing for a few minuets on the shadowy side of a street on a fairly sunny day I can end up with cold fingers and toes. On much warmer days I do feel far less effects from the Raynaud’s. However emotional stress and hormones can also be a trigger so even in summer my Raynaud’s can still be an issue at times.
My toes have been particularly painful. They can be sore all day sometimes and walking on them very far can be uncomfortable. It can feel like I have lumps on the ends of my toes like corns even when there is nothing there. On the worst occasions my toes feel heavy like led or stone and it takes effort to bend them.
I have more sensitive fingers and toes than I used to. If I even slightly knock my toe against something like the edge of my bed or a table leg it can be very painful and the pain will last longer than expected. My fingers and toes are more sensitive to very cold or hot water and it hurts if the water is the wrong temperature when I wash my hands, take a shower or wash up.
Sometimes the dexterity in my fingers can poor or during a very bad phase almost non-existent. During a bad period I can struggle to grip things properly and drop stuff more. I can find getting pills out of blister packs harder and struggle to do up the zip on my coat at times.
Raynaud’s has had an effect on the skin around my fingers and toes. My skin seems to dry out more quickly, break and shed more, especially on my toes and can be quite sore if I do not moisturise regularly. If I spend more than a few minuets with my fingers and toes submerged in water such as in a swimming pool or bath I get more than the usual slightly wrinkly skin, my toes will shed strips of skin. I already moisturised my hands and fingers, but I now moisturise my toes as that does help a little bit.
The odd thing is that if I leave it too long to warm up again during a flare up, when I do start to warm up my fingers and toes can go bright red and actually become painfully hot. Also I have found in summer on very hot days my toes can over heat and go red without even having had a cold flare up first. It seems my toes are especially sensitive to extremes in temperature either cold or hot, although cold is definitely worse.
I have been learning ways to prevent particularly bad flare ups from happening too often. I wear gloves when I go out in cooler weather and make sure I carry a pair just in case it gets colder on days the weather is not even particularly cold. I have warm drinks regularly which I can wrap my fingers around. At home I wear slippers with socks most of the time. For most of winter if I was going to sit on the sofa for more than a few minuets I would use a microwavable wheat bag on my feet to keep them warm when not moving much. At night I have a hot water bottle for my feet and my wheat bag for my fingers.
Rather annoyingly I had to come off my anxiety medication as it is a beta-blocker which can aggravate Raynaurd’s making flare ups more regular and longer lasting. Beta-blockers can lower blood pressure which is not good when you have circulation issues. I had only been taking anxiety medication for just under a year and only as and when I felt the need, but as an autistic person I found it did help somewhat to prevent meltdowns becoming so bad or to help me though what I knew was going to be a stressful situation. However the tablets only helped a bit and I would rather not have worse Raynaurd’s symptoms.
I have what is known as primary Raynaurd’s, it could be worse, secondary Raymaurd’s has even worse symptoms. Secondary Raynauard’s is caused by having another condition, usually an autoimmune disease like scleroderma or lupus. Secondary Raynaurd’s can cause ulcers on the skin or sores and needs monitoring carefully. One in ten with primary Raynaurd’s will go on to develop secondry Raynuard’s. If I keep on top of my flare ups and do not allow too many bad ones I can help to make this less likely to happen.
To find out more about Raynaurd’s I recommend the Scleroderma and Raynaud’s UK charity website, which helped me when first diagnosed to find out more about the condition. Www.sruk.co.uk
I pick up my pain story where I last left it in January.
I finally had my first appointment with the pain clinic. I saw a doctor who specialises in pain. She asked me a lot of questions and tested my range of movement. I had bloods taken by a nurse to check for inflammation or any other cause of my pain, just in case, but the doctor seemed doubtful anything would come of it. I was told about a talk I could attend led by pain specialist physiotherapists. If I found the talk helpful I could then book onto more talks on various pain related topics and onto short courses to get me more active again in ways that might help. I thought it was at least a start and could help me to learn more about my pain. I then had to wait for the doctor to refer me.
A couple of weeks later I got a letter from the pain clinic with a report from the doctor of what we discussed. It might come in handy if I apply for Personal Independence Payments benefit anytime soon. Having had this chronic pain so long and on top of my other conditions I suspect I might now be eligible for it.
Then a day later I got another letter, this time confirming my referral to the pain physiotherapists. I got a short questionnaire to fill out with it about my pain and sent it back to them. Not long after that I was sent my appointment for the initial talk with them.
I attended the talk at the start of March. It lasted about an hour and half with a short break in the middle, with about twenty other people. The first half was about pain itself, what pain is,different kinds of pain and how it can affect people. The second half was about the services they offer and other services offered elsewhere. We then had to decide if we wanted to attend any of the seminars or workshops on offer from the pain clinic. I made my initial choices, but was told that if I change my mind and wish to attend something different I could. I decided to give the seminars a miss for now. I definitely want to give the short course of Tao Chi a try. Physiotherapists have told me my shoulders are very tense and I need to learn to relax them. I am hoping Tai Chi can help with this and that can help reduce the pain in them. I also selected PhysioYo, a short course of physiotherapy mixed with yoga style movement that can be adapted to each persons needs. Having done a little bit of yoga at university, I think I could get on well with this. I decided to also see the occupational physiotherapist who you see one to one as she could have some helpful advice and ideas on how to make my everyday life a bit easier.
Towards the end of March I got a letter confirming I am on a waiting list for the pain clinic services I chose. Then Coronavirus became a serious issue world wide and the UK went into lock down. So another letter was soon sent to me, to let me know that their courses have been postponed until further notice.
For most of March, although still there, my pain was less intense. However since the start of April my pain has flared up again. I think my mental health could be a contributing factor to my physical pain. The frustration of the lock down, living alone, not being able to visit my family and do the things I want to do can sometimes put me in a low mood or an angry mood which may not help. Although it cannot be the only factor as I am not in a low mood constantly. It is frustrating being in pain not being able to get on with the pain clinic things I was quite hopeful about.
The other issue with lock down is getting hold of pain medication. I went for two weeks without paracetamol as everywhere in town had sold out, which made me quite cross about panic buyers who may not even need them right now. Luckily I have my prescription codeine which is more effective anyway, but I do not like to take it all day as it can make me very tired, can be addictive and can become less effective if used a lot over a very long period of time. I agreed with my doctor to take it first thing when I wake up and last thing at night only. So on a bad day I use paracetamol to take the edge off my pain in the middle of the day along with ibuprofen. There have been days since when I have been unable to get paracetamol, but I try to make sure I start looking for it before I get too close to running out now. I also have to make sure I order my prescription in good time now as it take up to a week to get from the doctor’s surgery to the pharmacy.
I have also had to learn to deal with my Raynaud’s in this time to stop that from causing too much additional pain. It does still flare up and hurt, but I am getting better at preventing a flare up or sometimes can at least reduce how bad a flare up will be using various ways to keep my fingers and toes warm. Now it is spring and the weather is a little warmer, it is not quite so bad all the time, but stress can also affect Raynaud’s and it never totally goes away completely. Sometimes the stress from my other pains acting up can cause my Raynaud’s to get a little worse again.
That is all I have for now, I will come back to this when I have something else to report on my pain issues.
This is sort of an extra post as I have time on my hands and somewhat off my usual topics.
As I have said in previous posts, occasionally I write song lyrics. lPart of a song, often just a couple of lines will come to me and play in my head, and from there it may grow into a full verse or chorus I have to write down and then add the rest of the lyrics from there. It is therapeutic for me, as a way of expressing my feelings, often during times I feel more vulnerable and emotional, so it is not always an easy choice to share my lyrics. However I do find it somewhat cathartic to put my lyrics out there and I find the responses to them can be interesting. Having now written several more songs I thought I would share some lyrics again.
Don’t (I hear this song as having a somewhat Euro dance beat for the verses with a slower chorus)
Don’t tell me you love me, then leave me Don’t tell me you need me, then walk out the door It’s not fair on my heart Just be honest right from the start Let me know where I stand
(Chorus) I don’t think my heart could take another break There’s pieces scattered around In varies places, in varies towns If you can’t follow through Please don’t day it at all
Don’t tell me I’ll meet someone new Don’t tell me that I will move on It don’t help me right now Just get out from inside my head Let me be loved for real
(Chorus) (Bridge) I don’t want another brief affair Every time one of them leaves another bit of me dies There’s not enough left to spare (Chorus)
Pretend (This song seems to suit a slow, almost melancholy tune)
Life it’s all just pretend Love it’s all just pretend But together we can make it Bearable
So come and pretend with me So come and keep each other company maybe we can fake it till it’s Real
(Chorus) Is it really easier on your own? You don’t have to spend your life alone I know you’re lonely just like me I refuse to give in so easily
Life it’s all just a game Love it’s all just a game But maybe we can play the game Together
So what will you do When you find yourself Old and alone?
Unreality (Another fairly slow tune, but with a slightly more upbeat, hopeful sound to it)
(Chorus) I’m living in my dreams ‘Cause nothings what it seems I’m lost in fantasy It’s an unreality
As I fall asleep at night I hold you nice and tight You say everything’s alright You’ll keep me close tonight
We have our future planned Together hand in hand As we’re lying in my bed But it’s all inside my head
(Bridge) In the light of day You always fade away (Chorus)
Once our love was real But you no longer feel anything But I still dream I still dream
Lost in fantasy, unreality
Floating Can’t you see what’s going on? Can’t you see? That I’m lost all alone And reaching out for you
Can’t you hear what’s going on? Can’t you hear? When I cry out in the night And it’s your name I call
(Chorus) I feel like I’m floating away Floating out to sea Drifting from everything that is me Watching reality pass me by
Can’t you feel what I feel? Do you care? Though you feel me standing near You don’t respond to me
Can’t you see what’s going on?
I Don’t Believe (An angry rock song, sung loud)
(Chorus) I don’t believe in any kind of god I don’t believe in aliens from out of space I don’t believe in ghosts and haunted rooms But most of all I don’t believe in you or us any more I don’t believe in anything, except rock and roll and alcohol
You just said what I wanted to hear You knew the game you played from the start I may have fallen for it then But I’m not falling for it now
You had your kicks and you had your fun You made sure you were number one Well your number is up now I’m making sure your out the door
So make sure the music is heavy and loud Pass us that beer, I wanna drink to oblivion
I have no faith any more There’s a Human Waiting in the Dark (This song was written during a time when their was a lot of campaigns to save the environment and a lot of anger directed at the current political system and capitalism)
There’s a human waiting in the dark He’s a rather precious thing You should treat him with your heart But all that you can see in the money that you’ll bleed Don’t you know your going to kill him Kill him with your greed
(Chorus) It’s too late to say you care Just saying you’ll be there It’s too late for words and talk Can’t you see it’s action that we need If we are to survive Instead of all just die
There’s a future waiting in the dark It’s a really fragile thing You should think about it more But all that you can see is your immediate need Don’t you know your gonna’ kill it Kill it for us all
You are amazing You are incredible Everything I ever wanted in a man But you are frustrating You drive me crazy
(Chorus) Why can’t I be with you? Why can’t I have you by my side? Looking on from a distance gets to be so hard After a while I keep seeing what I’m missing Why can’t I be part of your life?
You are exciting You are exhausting To think about everyday Knowing you are out there This drive me insane
I know your having fun without me This makes me feel I was good enough I don’t care what you say I can’t help, but feel this way
We Are Fools
We are young Young enough to start again But not so young I don’t feel a fool For ending up here once more So soon after the last
(Chorus) We are fo-o-ls For falling ourselves That this could be the one We are fools for falling in love And I did it again
We are old Old enough to know the score Because the writings on the wall There’s no way that thing can last As we’re on different paths
(Chorus) (Bridge) Why can’t I be alone Why am I always searching for the one It just messes with my mind Every single time it goes wrong
We are fools for falling in love And I am the biggest fool of them all
I recently joined a couple of autism groups on Facebook. They brought some issues to light I was not even aware of or remind me of others I had come across before. It got me thinking about things and I decided to share some of the issues that come up more regularly. I hope it helps others to understand autism and the autistic community a bit better.
Autism is lifelong; you cannot develop it later in life. Hence it is not caused by immunisation such as MMR vaccines or diet or by certain food colourings because it is something that you are either born with or are not. Being lifelong also means it does not stop when a person becomes adult, although you could be forgiven for thinking it does since most of the support and information out there for it is based around children. However some people only find out they are autistic later in life so it can seem as if they suddenly developed it, but actually it was just never picked up on before.
The autism community have a phrase ‘If you know one person with autism, you know one person with autism’. Autism affects everyone with it differently and just like people without it we all have individual personalities, we do not all like the same things, we do not all have the same beliefs and we have different skill sets. Some people make assumptions based on their autistic relative or friend which are often wrong and it is annoying.
Some people act like all autistic people are wonderful and can never do anything wrong intentionally. As an autistic person I am telling you this is simply untrue. Again I have a personality and sometimes I can be rude to someone on purpose, or I can simply not get on with everyone because let’s face it most people do not get on with everyone. Some autistic people can commit crime knowingly. I find it patronising when autistic people are treated as if we are all little angelic beings. Treating autistic children this way only leads to autistic adults who then think autism is an excuse to get away with things.
Car stickers, t-shirts or anything else with ‘I love someone with autism’ printed on them are patronising and very annoying. They tend to be purchased by parents of autistic children, which seems very odd to me because you are supposed to love your children autistic or not. There is a whole bunch of autism martyr parents who make out that they are some kind of amazing person for being able to love their child despite the child being autistic. Firstly it gives autism a negative association for the child and can mean that person grows up to feel like a burden. Secondly it makes autism the main thing about that child, as if they are autistic first and a person second.
Aspergers was once thought of as a separate condition to autism although with similarities. Autism is now considered to be a spectrum with a much wider range of abilities and characteristics on it than previously thought. Aspergers is now seen as on the autistic spectrum. Some experts are now dropping the Aspergers diagnosis altogether and purely diagnosing autism to make it clear that the person is on the spectrum.
I dislike positive versus negative autism posts. There are a lot of posts that go on about positive traits of autism. When it can be hard to separate autism from a person’s personality because it is just part of who they are and how their brain is wired this is meaningless. That and I can often find a way to turn a so called positive trait into a negative, depends on perception. Autism is just part of who I am and that is neither good nor bad.
Autism often comes with co-conditions. Conditions you can have without being autistic and not all autistic people have them all, but are often seen in people with autism. OCD is one of the most common co-conditions seen with autism. I have both and my autism can make some of my OCD trait worse. Some kind of learning disability is extremely common with autistic people, sometimes only in certain specific areas and sometimes much more pronounced. I am almost certain I have dyscalculia, a difficulty in understanding arithmetic, sort of like a maths version of dyslexia. A lot of autistic people also have epilepsy or some kind of fits, although I personally do not.
Autistic people can have any kind of mental health issue anyone else can. So you can have autistic people who are also bipolar or schizophrenic for example. Very commonly autistic people have depression and anxiety.
In the autistic community people without autism are often known as NT, which stands for neurotypical. Meaning people who have typical developmental and cognitive abilities. Autistic people are often described as ‘high’ or ‘low’ functioning by others, but a lot of autistic people dislike these terms. If someone is described as low functioning it can lead to a person being denied a chance at doing things for themselves or what they can do being ignored. Describing someone as high functioning can lead to that person feeling unable to ask for support or being denied support as they are seen as being able to cope on their own with everything. Also I am more high functioning on some days than others depending on the situation I am in, my mood and others around me. The terms also play to the stereotype that high functioning autistic people all have a really high IQ or some amazing talent like number calculation and low functioning are all brain dead morons. In fact I have pretty average intelligence and do not seem to have some savant ability at anything, and most autistic people seem to be similar.
For many years the symbol for autism was a multi coloured puzzle piece. This has now fallen out of favour with many autistic people, all. To a lot of autistic people the puzzle piece says that we are a puzzle to others and missing pieces . The National Autistic Society in the UK have dropped the puzzle piece from their logo now. The preferred symbol now used by a lot of autistic people is the infinity sign with a spectrum of colours on it.
ABA, Applied Behaviour Therapy used to be the main therapy used with autistic children. It is basically teaching an autistic child that their autistic traits are wrong and they should mask who they are. The argument for it is that the autistic child will fit in to society better if they act more like everyone else.
Whilst some autistic traits are less desirable in some situations and almost all autistic people have to mask sometimes, doing it all the time can be mentally damaging. How an autistic person thinks and feels is denied as invalid with ABA. The way ABA is often applied is also sometimes close to treating the child as if they are in the wrong and they have to be punished. Some autistic people say it is close to being scared and bullied into behaving in an acceptable way. Sadly ABA therapy is still used quite often, especially in special education settings. Most autistic people are totally against ABA and no one who has had it I have spoken said it helped them long term.
Autism Speaks are a charity that started in the US, but now have branches in Canada and various other countries. However most actually autistic people do not like them. They were started by parents of an autistic child who are not autistic themselves and clearly see autism as a negative thing. The charity promote ABA therapy as a good thing and when they first started were fundraising for research into a cure for autism, which shows a huge lack of understanding as to what autism is. Autism speaks is dangerous as parents often turn to them when their child is newly diagnosed and could set them off down a path that can do more harm than good for the child.
Some autistic people get very hung on the exact language used when discussing any issue to do with autism. A lot insist on first person language, putting the person before their disability, which on the whole I prefer myself. However some get so hung up on this in an article or post on Facebook they can miss the whole point of what the writing was actually about and sometimes when the article is making a good point or someone really needs help in a comment it can seem a shame that some refuse to even give it the time of day due to the way the language is written. Often the mistake is made by well meaning parents who are new to the autism community and need to be told politely about the language issue rather than just rudely dismissed.
Many businesses open to the public could do more to make themselves disabled friendly. Some seem to think it is OK to ignore disabled customers needs totally and some have made a good start, but could do better. The disabled know that not every business can make themselves totally disabled friendly, some are restricted by the building they are in or by the nature of the business they do, what we are asking for is businesses to make adjustments where they can. Many shops, cafes, pubs and other publically accessed buildings are actually missing out on what could be added income by not even considering the needs of disabled customers. These are some of my suggestions to make businesses more disabled friendly.
Ramps and hand rails
This may seem an obvious one, but some business have not even gone as far as making it possible for some people to get past the barrier of steps. Some businesses cannot add a ramp permanently as they are a listed building or it would stick out too far onto the pavement, but they could often provide a portable ramp that can be put in place when needed. Even if a business has a portable ramp, often it needs making clearer that they have one available and how to get it put out. A sign needs to be put in the window that they have a ramp and how to get the staffs attention that it is required. It is no good just having to yell in the hope they hear you through the door and down the other end of the shop or in a busy bar. The best solution I have come across is a bell you can ring so that someone will come out and help. Also if a ramp cannot be used, at least have hand rails that are in good condition at the side of the steps. I have seen broken hand rails more than once or ones that just stop suddenly before the steps have ended, which is annoying.
Heavy or difficult doors
After the barrier that is the steps, next comes the door. Really heavy doors can be a problem for wheelchair users, those with any kind of walking aid and those with wrist or arm issues. Not only is this an issue for the disabled, but those with pushchairs or heavy shopping. Some doors can be so hard to open you think the business is closed when it is not. Doors need to be kept well maintained if they are prone to swelling in damp weather and need to not be too heavy or stiff. A good door handle is vital when not using automatic doors.
Even the surface of the floor can be an issue in some places. The floor needs to be kept smooth so a wheelchair can move across it. Door mats and rugs need to be stuck down firmly so that people who find walking tricky or have walking aids do not get caught up in them, they can be trip hazards in some cases.
Some places have very little floor space which can be tricky for those in wheelchairs or on crutches needing space to manoeuvre. Shops should avoid having items directly on the floor if possible. Aisles should not be too close together, people need room to get up and down them without having to back a wheelchair up. Cafes, restaurants and pubs often have their tables too close together, leaving no room for wheelchair uses to pull up to a table or for some people with walking aids, a tight squeeze can be near on impossible.
Lighting is a very important factor in any business. Places with really low lighting are frustrating to those with less than perfect eye sight. Sure they are trying to create mood lighting, but when you struggle to see what you are doing it is just annoying. Costa Coffee is one of the worst examples of this I have come across; almost all of them are pretty dark. Then again lighting that is too bright can be painful on the eyes and can cause headaches, especially to those with sensory issues. Flickering bulbs can cause problems for those with sensory issues as well, it is important to change bulbs that flicker promptly.
Seating in a café, restaurant or pub needs to be comfortable to sit on for an extended period of time. Too many pubs rely on stools for seating. Whilst most people can sit on them for short periods, I have noticed not many people seem to find them comfortable for long. Sofas and bucket style chairs seem popular in cafes these days, whilst these are fine for some people; they are often too low for me. For those with back issues, hip or knee problems, chairs and sofas that you sink into can be hard to get on and off. Too many places that serve food do not have chairs compatible to the height of the tables, which means you either end up with food in laps or setting off any back issues someone may have. A range of different seating options is the best solution, but at least choose chairs at a sensible height with proper backs to them.
Background music should be just that, in the background. Some places have the music so loud that you cannot think what you are doing. Those with sensory or concentration issues can find loud music so intrusive that they will just walk out again.
Signs and menus
Anywhere that serves food and drink needs to keep menus clear and easy to understand. Some menus are too busy with so many visuals they are confusing. Remember dyslexics and others who struggle with reading may find it tricky to understand a complex menu, keep the layout simple. The same goes for signs, keep them simple with a clear font.
In a café or pub staff should help customers that are clearly struggling to carry a tray of food or drinks. I have had staff just watch me struggle and if I drop it, they only make more work for themselves having to clear up the mess. On the other hand in shops I have had over helpful staff who keep asking if I need help when I have clearly said no. Some autistic people struggle with social interaction and this could be very off putting for them, especially if they are already struggling to concentrate in a public setting. Staff should only ask once if someone needs help and should also not make me feel watched the entire time like I am some potential shop lifter, this has put me off some shops totally.
At the till
At the till it can take some people longer to pack their bags than others. I would like to not feel rushed by the cashier as if I am being slow and do it on purpose. When I was on crutches this was even worse as it could take me a while to put the crutches to one side, pack my rucksack, put it on my back and then get the crutches back on, but a few cashiers used to roll their eyes at me. Other customers could also be more patient with someone on crutches or any kind of walking aid as shopping with them is not easy. Also some people take longer when they have cognitive issues or even issues that can impair dexterity in their hands such as arthritis.
I have said this in previous blogs as it is one of my pet hates, badly designed or misused disabled toilets. If possible a business should have a separate disabled toilet, disabled people can take longer than others and this helps free up the other toilets. A lot of places also assume all disabled people are in wheelchairs and therefore put the mirrors really low, or quite often do not put any mirrors in at all, as if disabled people cannot possibly care about how they look. Most importantly of all businesses should remember the disabled toilet does not double up as the cleaning cupboard! There needs to enough space left for turning room for a wheelchair, but often the toilet is so cluttered that there is simply no room.
I hope this will start more of a debate around accessibility and give bsuiness owners more of an idea of disabled customers needs. Also I hope disabled people feel justifed in standing up for their rights as customers and start asking some places for better acsess.
I said I would be coming back to this topic and so here we are. I last wrote about this in October so that is where I will pick things up from.
I got a referral to the Social Prescriber at my GP surgery. This is a role I had not heard of before. According to the NHS website a social prescriber looks at non-clinical ways to help with chorionic conditions. So I thought I might get some advice on fitness classes or free swimming sessions or something along those lines as the online description seemed to suggest. However, although she was a nice enough person, my local social prescriber left me thinking of the phrase ‘as useful as a chocolate teapot’. She had no medical training at all and was basically there to suggest ways to distract me from my pain and to get out more. She asked me about my hobbies and as soon as craft came up she suggested I join a local craft workshop. Had I heard of this local arts and craft place? Seeing as I had already told her I volunteer in a craft shop and show an active interest in craft, funnily enough I had come across it before. Some of her suggestions, whilst I can see they were not all totally stupid ideas, did not take account for my limited budget, which she had already asked about. When she resorted to looking up things online to get ideas, I knew the session was not going to benefit me. It is also not going to benefit many others if there is no help with the costs, most of these suggestions were not free and certainly not free to travel to. I hope most social prescribers are more useful, otherwise what a waste of an NHS budget when it is already struggling finically.
I made a follow up physiotherapy appointment as I was supposed to do. This time the appointment came a lot quicker than before. I managed to see the same physiotherapist as last time which helped. I felt able to say my wrist and hand exercises are helping a tiny bit, but not a vast improvement. I was told to keep up the exercises till the pain has totally gone, which it still hasn’t. I mentioned that I now have almost constant shoulder pain, but still no help with that despite making it clear that it was probably the worst part of my pain issues at the time. He did feel annoyed on my behalf that my pain clinic appointment had still not come and said he would contact them for me.
I managed to get another GP appointment, this time with only a two-day wait, much better than last time which was nearly a month. I saw a different doctor this time and was given a new painkiller to try along with the codeine, Amitriptyline. Often used as an antidepressant it also is used for neuropathic pain and tension headaches. The idea was to take them mainly at night to help me sleep, since the pain is making getting to sleep harder. However after taking the entire packet for about a month decided not to order any more as they seemed to prove ineffective.
I finally found my TENS machine again, which I used to use before my hip replacement. It sometimes helps to slightly relax my neck and shoulders. It is most helpful at night right before bed so I can lie down more comfortably. Its affects do not last that long and it does not totally get rid of the pain, but it does help to relax my muscles somewhat. Another slightly helpful thing I have found is muscle rub gel. A gel you rub in to the sore muscles. Again the relief is only temporary and only mildly helpful, but better than nothing.
Then I noticed a new issue, pain in my toes, they seemed to get overly cold, red and very sensitive. The pressure of walking sometimes hurt my toes. One night my left toes got super cold and tingly and then hurt a lot, two toes went purple. Despite socks and being under the bed covers it took nearly an hour to fall asleep due to the pain. I mentioned this to the doctor who suggested it could be Raynaud’s Syndrome.
According to SRUK, a charity that supports those with Raynaud’s, ‘Raynaud’s is where the small blood vessels in the extremities such as hands and feet, fingers or toes are over-sensitive to even the slightest changes in temperature, the cold and sometimes stress’, (www.sruk.co.uk/raynauds/what-raynauds/)
A couple of weeks later my fingers started to also get painful and sensitive in cold weather. My fingers sometimes go totally white and become more difficult to use. Sometimes a flare up can last a good twenty minutes or so in my fingers. My toes got worse becoming so sensitive that even the slightest knock to them can hurt way more than it should. The tips of my toes have pealing skin and some have developed a hard white crust on them at times.
I then had another doctor’s appointment, this time with my own GP. This time she actually looked at my fingers and toes. She put pressure on them and noticed they stayed white after for longer than normal. She confirmed I do have Raynaud’s Syndrome. She said that although not initially caused by it, Raynaud’s can be made significantly worse by joint issues such as the ones I have. She also took me off a medication I was on for anxiety as it can also make Raynaud’s worse. Whilst the anxiety pills were not amazingly helpful, they were somewhat useful, so that is a bit annoying.
The main cause of a Raynuard’s flare up is cold weather, but stress, emotional changes and hormones can also be a factor. So being the middle of winter my fingers and toes have hurt rather a lot recently, in fact my toes have hurt almost non-stop for nearly a week now, although the severity to which they hurt can be less at times. So I am trying to keep my fingers and toes warm and avoid being outside in the cold for very long.
Finally the pain clinic has sent me an appointment. It is at the end of January, so that took five months from making the initial referral! I suspect the only reason I even got this appointment was both my GP and physiotherapist contacting them again on my behalf.
Again I will be coming back to this topic when I have an update on how things are progressing with my pain issues. This has been a slow process so far and certainly not yet done trying to figure out what exactly is going on with my body.
‘Perthes is a childhood disorder which affects the head of the femur (the ball of the ball and socket joint of the hip). In Perthes disease the blood supply to the growth plate of the bone at the end of the femur (called the epiphysis) becomes inadequate. As a result the bone softens and breaks down (a process called necrosis). Over several months the blood vessels regrow, and the blood supply returns to the ‘dead’ bone tissue. New bone tissue is then laid down and the femoral head regrows and remodels over several years. This is similar to how bone reforms and remodels after any ‘normal’ fracture or break to a bone, but takes longer,’
(https://www.perthes.org.uk/what-is-perthes-disease/) As this quote says Perthes is a childhood condition that affects the hip in growth. However, I often come across adults talking in various social media groups as if they still have Perthes and some even swear blind they still do have it. Technically no one can have it as an adult, but you can have the after effects of having had it as a child. The after effects for me where Justas bad as the Perthes itself.
Not everyone who has Perthes will go on to have such bad after effects; some will have very little at all. It is said that the younger someone has Perthes the better the chances of a full recovery with less side effects, particularly those aged under five. I was diagnosed aged seven and my hip never seemed to grow back fully in the right shape or size.
Pain and hip replacement
I almost always had some kind of pain coming from my hip area, be it the hip itself or the weak muscles. The pain did not go away after the Perthes was said to have run its course due to the damaged state the hip was left in. Not all Perthes patients carry on having pain like I did; it depends on how well the hip grows back to its proper shape. In a lot of cases the ball of the hip does not reshape to fit the socket well, which can lead to a faltered ball, creating significant problems later.
It is said that patients who had Perthes are at higher risk than most of having osteoarthritis, one study of sixty people with Perthes put it as high as over fifty pecent and often at a younger age than normal. I was told I was developing the early stages of osteoarthritis in my early twenties. This eventually led to me using crutches on a daily basis as weight bearing on the hip became too painful. Then aged twenty-five I had a total hip replacement.
After my hip replacement I had a lot less pain from the hip area, but my muscles were very weak from lack of use over many years. Once I started doing more with the leg the muscles became sore. Pain after Perthes is very common in muscles suddenly being used more than they are used to. I have found physiotherapy very helpful for strengthening my muscles again.
Leg length issues and posture
Leg length discrepancy is common amongst those who had Perthes due to bone growth not being complete or loss of height due to flattening of the head. Also, some surgeries such as femoral varus osteotomy can contribute to leg length discrepancy, making it a now less preferred treatment for some surgeons.
I had a 1.5 cm difference in leg length before my hip replacement which caused me to limp. A long term limp is not good for your posture. I ended up having posture related issues. I had back pain off and on since about the age of eleven, nothing server, but early signs the way I walked was not good. Then in my late teens I started to get neck and shoulder problems which gradually got worse, till one day aged twenty-four I woke up with a frozen shoulder, which took weeks to get back to fully functioning again and still has twinges now and then.
Physiotherapy has helped a lot with my posture issues. Initially several sessions of massage using ultra sound with the physio gave me great relief, followed by doing the exercises she gave me every single day. I still do some of those exercises years later. The exercises prevent my posture issues from getting even worse and help a lot with the pain.
During my hip replacement my surgeon made sure to correct my leg length difference as much as possible, this has almost removed my limp entirely (apart from when my hip muscles are very sore).
Another thing that can be done is to have an orthopaedic lift fitted to your shoes or an insole used for less server discrepancies. An orthopaedic specialist can advise on this.
It is important to make sure any walking aids such as sticks and crutches are the correct height as this can also be a contributing factor for posture issues. I feel that years of using a cane did not help my back, leaning to one side.
Fitness and fatigue
Due to pain when using my hip much before my replacement I had a poor level of fitness. When you struggle to even walk well it can make exercise tricky. Swimming was about the only proper exercise I found that was not too painful. It made recovery from my replacement surgery slower as not only were my leg muscles weak, but I had become used to not walking very far at all. I had to build up my fitness levels again. Physiotherapy, aqua fit classes and walking more helped with this.
Another reason I was so unfit was the fact that I was tired most of the time. Constant pain is exhausting. Pain can affect your sleep, making it hard to get comfortable and fall asleep. I found when very tired my hip hurt more, making it even harder to get to sleep. I was also on some strong pain medication which probably contributed to how tired I was feeling. Fatigue made getting much exercise and doing much at all hard work.
I suddenly start to yell at the people around me, getting
increasingly loud. I yell abuse, threats
and swear. I stamp my feet, bash the
table and cry, sobbing loudly. I look
like a toddler having a tantrum, except that I am a full grown adult.
A tantrum is voluntary, used as a tool to manipulate and get
your own way. However I have no control
at this point, there is no planned purpose or manipulation intended. My emotions are at over load and crashing
down like an avalanche. I am having an
This describes my meltdowns at their worst, when I totally
loose it. Not all my meltdowns are at
that level. They vary in intensity and
in how long they last.
What causes me to have a meltdown is not always easy to pinpoint. It can be caused by a sudden change in plans or lack of knowing what the plans are. If plans are made and I am expected to be part of those plans, but I am not informed in exact detail as to what those plans are in advance, it can cause me to get confused and upset. Any kind of confusing situation can cause a meltdown if it continues being confusing for a significant length of time. Frustrating situations such as people continuously not listening to me or things going wrong a lot can be a trigger. Another trigger can be interrupting one of my OCD routines, when I am already somewhat stressed. Fatigue can be a cause, when I am too tired to control myself any more. Major disappointment has been a trigger in the past. Sometimes a meltdown can be me having made such an effort to fit into a situation for hours that I eventually explode. I will have kept back opinions, been polite to people who frustrate me and basically have been in a situation I find difficult for so long that in the end a meltdown is like a cathartic release. Putting pressure on me to do something I have clearly already said no to is a big trigger and can cause me to feel like you do not respect me, no means no!
Often a meltdown may not be caused by one specific thing,
but by a series of things that can build up over time. It can take hours or days for the triggers to
build up sometimes and one last thing can be the final straw. I can sometimes work out why I had a meltdown
afterwards, but often struggle to know at the time and sometimes never figure
it out. Asking me at the time why I am
having a meltdown is not a good idea, often it just makes my meltdown worse,
making me frustrated that I do not know why I am having it.
Sometimes I can feel myself getting increasingly annoyed and
know I need to get away from the situation.
If I need to leave a room or walk away let me, it will be better for
everyone. However I can’t always feel it
coming and it will happen like it or not.
When I was younger I had more frequent meltdowns that often
lasted longer than they do now. I had
them a lot as a teenager in school. I
think I was frustrated with life then, feeling trapped in a school that did not
really meet my needs. Being undiagnosed
I was not getting the right support.
Also I am sure puberty played a part.
I still have meltdowns, but less often than I used to. I feel maturity has helped a lot having had
time for my hormones to settle down and time for me to get used to life as an
adult. I also feel my independence has
helped me. Since l got my own flat I feel
more stable and able to manage my own life.
I am in charge of what do and when, making me less confused and
frustrated. I am also better at dealing
with certain kinds of stressful situations.
When I do have a meltdown now I find I they do not last as
long as they used to. I can calm myself
down more quickly and rationalise with myself somewhat about the
situation. Being angry at people who can
do nothing to help is daft and will not get me anywhere.
Yoga breathing can help slightly to prevent a meltdown
getting worse, but it depends on the exact situation. It helps me to focus my mind on the breathing
and think calmer thoughts.
I hate that I still have meltdowns at all. It makes me come across as immature and selfish. It gives the wrong impression about me to
other people, like I am just some angry, hate filled bitch. Telling me to grow up or to stop being so
over sensitive is unhelpful, if I could totally stop having meltdowns I would.